Palliative C are i n H eart F a i l u re Judith E. Hupcey,
EdD, CRNP
a,
*, Lisa Kitko,
PhD, RN
b
, Windy Alonso,
MS, RN
a
KEYWORDS Palliative care End of life Heart failure Family caregivers KEY POINTS Heart failure is a progressive life-limiting disease, with high morbidity and mortality, yet advance care planning, end-of-life conversations, and referrals to palliative care do not occur frequently. Palliative care is a philosophy of care focusing on patients and their families from diagnosis through death and bereavement. Nurses serve as a bridge to palliative care by providing basic palliative care interventions and recognizing the time for referral to specialized services. The 4 overarching components of basic palliative care address issues concerning the patient’s emotional, social, spiritual, and physical issues, including uncontrolled symptoms. Nurses should be advocates for patients and caregivers by initiating specialized palliative care consults for all patients with advanced heart failure.
HEART FAILURE BACKGROUND
Approximately 5.7 million Americans are diagnosed with heart failure and this number is increasing.1 It is anticipated that the number of heart failure cases will increase 46% by 2030 to more than 8 million, with the cost surging from $30.9 billion in 2012 to almost $70 billion in 2030. The number of deaths attributed to heart failure also remains high; the numbers virtually unchanged from 15 years ago, with the 5-year mortality rate after initial diagnosis still hovering around 50%. Patients with advanced or stage D heart failure even have a more dismal prognosis.2 After a hospitalization for an acute exacerbation, there is an 11% chance of death within 30 days of discharge and a 25% chance of readmission within 1 month of discharge.3 Although heart failure is a progressive and life-limiting disease with high morbidity and mortality, advance care planning and end-of-life conversations frequently do not
There are no commercial or conflicts of interest for the authors. a The Pennsylvania State University College of Nursing, 1300 ASB/A110, 90 Hope Drive, Hershey, PA 17033, USA; b The Pennsylvania State University College of Nursing, Nursing Sciences Building, University Park, PA 16802, USA * Corresponding author. E-mail address: [email protected] Crit Care Nurs Clin N Am 27 (2015) 577–587 http://dx.doi.org/10.1016/j.cnc.2015.07.007 ccnursing.theclinics.com 0899-5885/15/$ – see front matter Ó 2015 Elsevier Inc. All rights reserved.
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occur, as patients, families, and health care providers wait for each other to initiate these discussions.4–7 One of the recommendations from the landmark (IOM) report, “Dying in America,”8 is clinician–patient communication with advance care planning (p. S-9), which at present is poor and feeds into the lack of services offered to patients with serious advanced illnesses and lack of advance directives, even with the sickest of patients.9 These services include both hospice and palliative care, and have been recommended to meet the complex needs of patients and their family caregiver throughout the heart failure trajectory.10 In addition, when palliative care and hospice are used in the last year of life, the rates of hospitalizations and outpatient visits decreases.11 The use of these services also is extremely important because heart failure patients are at risk for rapid decline and sudden death.12,13 However, in-patient palliative care consultations, if done, typically are not being ordered until the last month of life,14 although the use of these services decreases costs and increases patient satisfaction.15 Although the percentage of end-stage heart failure patients referred to hospice has significantly increased since 2000, heart disease in general still only accounted for 11.2% of hospice admissions in 2012,16 with less than 10% of these admissions for heart failure.13,17 For other medical and therapeutic services (eg, cardiac rehabilitation, occupational therapy, physical therapy) focused on promoting, restoring, and maintaining health, with the goal of maximizing the level of independence, only 4.3% of admissions were for heart failure.18 WHAT IS PALLIATIVE CARE?
Palliative care is a philosophy of care and care delivery service that focuses on both patients and their families throughout the trajectory of a life-limiting/serious illness,10 from diagnosis through death and bereavement. As a philosophy of care, palliative care is delivered across the continuum of health care settings by both certified palliative care specialists and noncertified health care providers.8 Specialty palliative care is provided by a team of palliative care–certified doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Basic palliative care is delivered by non–palliative care–certified professionals. These include services provided by primary care providers, subspecialists (eg, cardiologists), nurses, and others health care professionals who care for these patients. According to The National Consensus Project for Quality Palliative Care the goals of palliative care are: to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.19(p6) Specific aspects of palliative care include the prevention and relief of suffering by means of early identification, assessment, and treatment of pain and other problems, whether they be physical, psychosocial, and spiritual.20 Palliative care is differentiated from hospice in that the focus of palliative care is on patients with a serious illness and can be provided along with life-sustaining treatments. Hospice, which also delivers palliative care, is described as, “a service delivery system that emphasizes symptom management without life-prolonging treatment and is intended to enhance the quality
Palliative Care in Heart Failure
of life for both patients with a limited life expectancy and their families.”21(p2) The traditional model of palliative care is shown in Fig. 119; however, this model shows an abrupt shift from life-prolonging therapy along with palliative care to hospice. Conceptually, this is not accurate because palliative care is an overarching philosophy that includes basic palliative care delivered by all health care providers along with specialty care and hospice as part of the delivery mode of care. Fig. 2 depicts a more encompassing model of palliative care as both a service model and philosophy of care. COMPLEXITIES OF HEART FAILURE AND PALLIATIVE CARE
Because heart failure is a life-limiting illness, patients diagnosed with heart failure fit the criteria for the provision of palliative care; however, few patients receive these services.22 There are many reasons why services are not received, including the unpredictable course of heart failure, which complicates prognostication; failure by health care providers to have advance care planning and end-of-life conversations with patients and families; a lack of understanding of palliative care by providers,4,23–25 patients, and families26,27; and a limited availability of specialized palliative care services.28,29 Heart Failure Illness Trajectory: Unpredictable Course
The heart failure illness trajectory is complex and unpredictable.2,12,30 The unpredictable nature of the illness trajectory is cited as a reason for services not being offered and, if offered, not being accepted by heart failure patients and families. The typical heart failure trajectory is characterized by acute crises followed by periods of stability that may last weeks to months to even years (Fig. 3).31 The concern with this model is the risk of rapid cardiac decompensation or sudden death. Although there are predictive models available, physicians may not attempt to risk stratify patients, are unfamiliar with these predictive mortality models, or are not comfortable with accuracy of models, and thus do not use them.17 To complicate risk stratification, predicted mortality can change with advances in medical management, cardiac resynchronization therapy, and device implantation (eg, implantable cardioverter–defibrillators and mechanical circulatory support devices). However, these patients still have heart failure and the use of and discontinuation of these devices need to be considered,13 because continued use of devices may not prolong life, but instead prolong dying.32 A more realistic and updated model of the heart failure illness trajectory is shown in Fig. 4. Failure to Have the Conversation
A second reason why palliative care is not offered is the lack of conversation about advance care planning, advance directives, and goals of care as the patient moves through the heart failure trajectory.5,7 Typical conversations between health care
Fig. 1. Typical model of palliative care. (Adapted from National Consensus Project. Clinical practice guidelines for quality palliative care. 2nd edition. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009.)
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Fig. 2. Model of palliative care as an encompassing philosophy of care. (Adapted from National Consensus Project. Clinical practice guidelines for quality palliative care. 2nd edition. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009.)
providers and patients focus on disease management and not end-of-life discussions. As a result, many patients do not even understand the terminality of heart failure.33 As stated, health care providers are not comfortable with initiating these conversations, but once initiated, many patients want to continue the discussion.6,7 Providers may need additional support and skills training to learn how to begin these conversations without worrying about taking away hope or fearing patients may perceive the conversations as being abandoned by the provider.25 Lack of Understanding of Palliative Care as an Overarching Philosophy Encompassing Hospice
Health care providers do not always have a clear understanding of palliative care and many cannot differentiate palliative care from hospice; thus, patients and their families are not offered these much-needed services.23,24 Additionally, providers do not always realize that providing palliative care or referring a patient and family to the specialized service is not prognosis dependent and is part of life-prolonging treatment.25 Without a clear understanding of palliative care, there is a fear of offering services too early owing to the belief that this service should be reserved for those near death.4 As discussed, palliative care encompasses care provided through the whole heart failure illness trajectory, from diagnosis to death and bereavement. The intensity of palliative care and the type and providers of palliative care (eg, basic vs specialized) may change throughout the trajectory, as depicted by the curved line in Fig. 5.
Fig. 3. Typical chronic disease trajectory. HF, heart failure. (Adapted from Committee on care at the end of life, Field MJ, Cassel CK, editors. Approaching death: improving care at the end of life. Washington, DC: National Academy Press; 1997.)
Palliative Care in Heart Failure
Fig. 4. Heart failure (HF) disease trajectory.
Lack of Available Services/Teams
Although there is consensus that palliative care should be offered from the time of diagnosis for patients with a serious life-limiting illness, the availability of specialized teams limits these services, many times to patients approaching the end of life.34 Thus, a gap exists between what specialized palliative care teams are able to offer and the needs of all palliative care hospitalized patients.29 The use of basic palliative care, provided by non–palliative care–certified providers could meet this need; however, many health care providers feel ill-equipped to provide these services and the resources to assist them are not readily available.35 In many areas of the country, there are limited specialty services and a lack of education for the provision of basic palliative care.28 An additional reason why services are not used, is related to patients and/or their family caregivers refusing to accept services.36 Use of services, including hospice, is influenced by cultural and religious attitudes, as well as patient preferences.17 Patients and their family caregivers also may not understand the terminality of heart failure, with the belief that patient always got better before.2,24,26,33,37,38 BASIC PALLIATIVE CARE FOR HEART FAILURE
Nurses are the bridge to palliative care services for patients with heart failure. There are many aspects of nursing care that are in line with basic palliative care interventions. By understanding what staff nurses, advanced practice nurses, and other health care providers can provide on a daily basis, specialized services can be reserved for when the patients’ needs are too complex for basic palliative care.29 Patients and their families face numerous challenges when living with advanced heart failure, which include physiologic, psychological/emotional, functional, social, and financial concerns.39 Families encounter additional challenges because their needs are not
Fig. 5. Model of palliative care for heart failure (HF).
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always assessed and their issues are not addressed, but are at risk for poor health outcomes and depression, especially when the patient is critically ill.40 Basic palliative care can help to address some of these concerns and challenges with the patient’s and family’s goals for care.25 Goodlin41 provides a comprehensive description of care for patients with heart failure that varies based on the New York Heart Association’s functional status classification and illness severity. Descriptions are given for general heart failure care (diagnosis, medications, and plans/goals of care) and supportive care, which includes communication, education, psychosocial or spiritual issues, and symptom management. The supportive care is part of basic palliative care that can be offered by all nurses and other non–palliative care–certified health care providers. The principles of palliative care for heart failure include managing burdensome symptoms that decrease functioning and quality of life and supportive care to address other issues.10 Included throughout the provision of palliative care is the continual conversation about goals of care, throughout the course of the disease and, in particular, as the patient’s condition changes and as advanced medical management and devices are discussed and implanted. There are 4 overarching components of palliative care for patients with heart failure: the patient’s physical issues and uncontrolled symptoms, emotional issues, social issues, and spiritual issues.8 These areas can be addressed through a comprehensive assessment and evaluation, followed by planned interventions to meet the identified needs of the patient. To begin to assess these issues, nurses need to have an open line of communication with the patient and his or her family members. Within this open communication, discussions related to goals of care based on potential treatment options, end-of-life wishes (including advance directives, advance care planning, and device deactivation) can be included in the conversation8,13 (For a full description discussing goals of care for patients with cardiovascular disease, see Dunlay and Strand 201542). During these encounters, nurses can both communicate with, counsel, and educate the patient and family about heart failure, proposed treatment options, and available supportive services, including financial services. Patients and their family caregivers may not seem to be distressed emotionally, but really do need time to talk about the challenges they face living with heart failure. The nurse should evaluate the patient and family caregivers’ ability to handle the challenges associated with heart failure, assess whether their goals for care match the plan of care, and determine whether the goals for care realistic based on severity of the heart failure. Nursing interventions include spending time talking to the patient and family caregiver, giving advice, explaining the types of available supportive services, explaining where they can get support, and referring to a social worker or chaplain, if needed. Patients and their caregivers also may not fully understand heart failure and its trajectory and they may need further explanation of the numerous options for heart failure management that they have been presented. The nurse should assess the patient and caregivers’ knowledge base, asking them what they understand about the heart failure and the treatment options presented to them. Education is extremely important here. This should include education about heart failure, where to access additional information about heart failure and its treatment options, what to expect as the disease progresses, and answer questions about management options. Table 1 shows components of basic palliative care and nurses’ role in providing palliative care. These components were adapted from the Institute of Medicine’s “Dying in America, Improving Quality and Honoring Individual Preferences Near the End of Life”; the American Heart Association/American Stroke Association’s
Table 1 Components of palliative care for heart failure Rationale
Nursing Care
Nursing Intervention
Physical: Symptom management
Uncontrolled symptoms result in a decreased quality of life and additional burden on the patient and the family caregiver.
Assess for uncontrolled symptoms, such as pain, shortness of breath.
Treat via standing orders, discuss with heart failure team if symptoms persist. Consider referral to specialized palliative care, if uncontrollable.
Emotional issues
Depression is common in heart failure,10 as is emotional distress.
Assess for depression and emotional distress.
Discuss suspected depression with the health care team and family caregiver. Spend time with the patient, allowing time to verbalize feelings/concerns.
Social/family issues
Having a chronic, life-limiting illness can place a strain on families. Patients may not be able to perform activities of daily living without assistance and at some point, may need continuous assistance.
Assess the family/social situation to determine what issues are present and the ability of the family to care for the patient at home.
Education about caring for the patient at home may ease some of the tension (eg, how to use a weekly organizer for medications); at other times, a referral may be needed for financial or social services.
Spiritual issues
Serious life-limiting illnesses can have a spiritual/religious component, even for individuals who do not consider themselves “religious.”
Discuss their beliefs with the patient and family caregiver.
Refer the patient and/or caregiver to the chaplain, if needed.
End-of-life care
As patients transition to end of life, many of these issues need to be addressed; cultural and ethical aspects of end-oflife care need to be assessed.
Patients and families should be supported through the end-of-life transition and families require additional support through bereavement.
Nurses can support the patient and family through end of life; referral to the specialized palliative team and to hospice is warranted.
Family caregiver assessment
Family caregivers are integral partners in the care of the patient and their well-being is important.
Assessment of family well-being as part of the nursing assessment.
Support the family and provide guidance on managing the patient and taking care of themselves.
Palliative Care in Heart Failure
Component
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“Principles for Palliative Care”10; Goodlin’s “Palliative Care in Congestive Heart Failure”41; the International Association for Hospice and Palliative Care (OAHPC), “IAHPC List of Essential Practice in Palliative Care”43; and Pastor and Moore’s “Uncertainties of the Heart, Palliative Care and Adult Heart Failure.”44 In addition to the 4 components of palliative care (physical, emotional, social, and spiritual), end-of-life care and family caregiver assessment are discussed. Furthermore, the National Consensus Project for the Advancement of Palliative Care19 lists other domains that need to be considered. These include the cultural aspects of care and end-of-life decisions and the ethical and legal aspects of care. According to the IOM report, “frequent assessment of the patient’s physical, emotional, social, and spiritual well-being”8(pS-7) must be undertaken. This is imperative because a patient’s condition changes continually (either declining or improving) and new medical interventions are proposed. These assessments, which are part of routine nursing care, need to be updated and ongoing to reflect accurately the changing needs of the patient and family caregiver. Staff nurses and advanced practice nurses are able to manage many of the patient and caregiver’s needs. However, if there are issues that are unmanageable, they should be discussed with the health care team, and ultimately referred to the specialized palliative care team, when necessary. FUTURE DIRECTION OF PALLIATIVE CARE IN HEART FAILURE
Palliative care plays an important role in addressing the complex needs of patients and families living with heart failure, a serious life-limiting illness. All nurses should be advocates for patients with heart failure and their family caregivers and be prepared to initiate specialized palliative care consults for all patients with advanced heart failure. However, the role of nursing does not end with this consultation. Basic palliative care provided by nurses must continue and nurses must be active members of the interdisciplinary team caring for the patient and family caregiver. As seen in Fig. 2, palliative care is an overarching philosophy that begins with the diagnosis of a serious, life-limiting illness and continues through hospice and bereavement. Caring for heart failure patients and their families is even more complex than depicted in Fig. 5, and requires nurses, as part of the interdisciplinary health care team, to be continually assessing the ever-changing needs of these patients and families. Areas for future improvement can be addressed through research and in clinical practice, and with education. It is known that in-patient specialized palliative care consultations have been found to improve outcomes such as symptom burden, depression, and quality of life as compared with routine care.45 What has not been studied is whether these improved outcomes would be similar with basic palliative care provided by staff nurses, advanced practice nurses, and non–palliative care– certified cardiologists. The problem is that many nonspecialized health care providers, including nurses, do not feel comfortable providing basic palliative care and are even less comfortable starting the conversation about advance care planning, goal setting, and other end-of-life topics. Education on these areas needs to be strengthened in the curriculum for nursing students and medical students. It also must be included in hospital orientation for all health care providers and part of mandatory continuing education for all providers. We know that nurses have an important role in supporting, counseling, and educating patients and their family caregivers as they transition through the heart failure trajectory. Nurses are optimally positioned to promote the recommendations of the IOM report advocating for the inclusion of palliative care early in the illness trajectory—with timely referrals to specialized services and hospice.46 Through the
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use of basic and specialized palliative care, nurses can address the holistic needs of both patients and families living with a serious life-limiting illness such as heart failure while improving outcomes and quality of life through the heart failure illness trajectory. REFERENCES
1. Mozaffarian D, Benjamin EJ, Go AS, et al. Heart disease and stroke statistics– 2015 update: a report from the American Heart Association. Circulation 2015; 131(4):e29–322. 2. Chen-Scarabelli C, Saravolatz L, Hirsh B, et al. Dilemmas in end-stage heart failure. J Geriatr Cardiol 2015;12(1):57–65. 3. Krumholz HM, Lin Z, Keenan PS, et al. Relationship between hospital readmission and mortality rates for patients hospitalized with acute myocardial infarction, heart failure, or pneumonia. JAMA 2013;309(6):587–93. 4. Kavalieratos D, Mitchell EM, Carey TS, et al. “Not the ‘grim reaper service’”: an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. J Am Heart Assoc 2014;3(1):e000544. 5. Barclay S, Momen N, Case-Upton S, et al. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Br J Gen Pract 2011;61(582):e49–62. 6. Gadoud A, Jenkins SM, Hogg KJ. Palliative care for people with heart failure: summary of current evidence and future direction. Palliat Med 2013;27(9):822–8. 7. Beattie JM. Palliative care for heart failure: challenges and opportunities. Eur J Cardiovasc Nurs 2014;13(2):102–4. 8. Institute of Medicine (IOM). Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press; 2014. 9. Butler J, Binney Z, Kalogeropoulos A, et al. Advance directives among hospitalized patients with heart failure. JACC Heart Fail 2015;3(2):112–21. 10. Braun LT, American Heart Association’s Advocacy Coordinating Committee. American Heart Association/American Stroke Association Principles for Palliative Care. 2013. 11. Dunlay SM, Redfield MM, Jiang R, et al. Care in the last year of life for community patients with heart failure. Circ Heart Fail 2015;8(3):489–96. 12. Lemond L, Allen LA. Palliative care and hospice in advanced heart failure. Prog Cardiovasc Dis 2011;54(2):168–78. 13. Whellan DJ, Goodlin SJ, Dickinson MG, et al. End-of-life care in patients with heart failure. J Card Fail 2014;20(2):121–34. 14. Bakitas M, Macmartin M, Trzepkowski K, et al. Palliative care consultations for heart failure patients: how many, when, and why? J Card Fail 2013;19(3):193–201. 15. Adler ED, Goldfinger JZ, Kalman J, et al. Palliative care in the treatment of advanced heart failure. Circulation 2009;120(25):2597–606. 16. National Hospice and Palliative Care Organization (NHPCO). NHPCO’s facts and figures: hospice care in America 2013 Edition. Alexandria (VA): NHCPO; 2013. p. 1–18. 17. Whellan DJ, Cox M, Hernandez AF, et al. Utilization of hospice and predicted mortality risk among older patients hospitalized with heart failure: findings from GWTG-HF. J Card Fail 2012;18(6):471–7. 18. Caffrey C, Sengupta M, Moss A, et al. Home health care and discharged hospice care patients: United States, 2000 and 2007. National Health Statistics reports; no 38. Hyattsville (MD): National Center for Health Statistics; 2011.
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19. National Consensus Project. Clinical practice guidelines for quality palliative care. 2nd edition. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009. 20. WHO. WHO Definition of Palliative Care. 2015. Available at: www.who.int/cancer/ palliative/definition/en/. Accessed March 20, 2015. 21. National Quality Forum (NQF). A national framework and preferred practices for palliative and hospice care quality: a consensus report. Washington, DC: NQF; 2006. 22. Kitko L, Hupcey JE, Palese M. Palliative care services during terminal hospitalization: stage D heart failure patients. In Heart Failure Society of America, 2014 Scientific Assembly. Las Vegas (NV), September 16, 2014. 23. Gelfman LP, Kalman J, Goldstein NE. Engaging heart failure clinicians to increase palliative care referrals: overcoming barriers, improving techniques. J Palliat Med 2014;17(7):753–60. 24. Hupcey JE, Penrod J, Fogg J. Heart failure and palliative care: implications in practice. J Palliat Med 2009;12(6):531–6. 25. Lindvall C, Hultman TD, Jackson VA. Overcoming the barriers to palliative care referral for patients with advanced heart failure. J Am Heart Assoc 2014;3(1): e000742. 26. Metzger M, Norton SA, Quinn JR, et al. Patient and family members’ perceptions of palliative care in heart failure. Heart Lung 2013;42(2):112–9. 27. Metzger M, Norton SA, Quinn JR, et al. “That don’t work for me”: patients’ and family members’ perspectives on palliative care and hospice in late-stage heart failure. J Hosp Palliat Nurs 2013;15(3):177–82. 28. Fink RM, Oman KS, Youngwerth J, et al. A palliative care needs assessment of rural hospitals. J Palliat Med 2013;16(6):638–44. 29. Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. J Palliat Med 2011;14(1):17–23. 30. Kheirbek RE, Alemi F, Citron BA, et al. Trajectory of illness for patients with congestive heart failure. J Palliat Med 2013;16(5):478–84. 31. Hupcey JE, Penrod J, Fenstermacher K. A model of palliative care for heart failure. Am J Hosp Palliat Care 2009;26(5):399–404. 32. Sobanski P, Jaarsma T, Krajnik M. End-of-life matters in chronic heart failure patients. Curr Opin Support Palliat Care 2014;8(4):364–70. 33. Kitko L, Hupcey JE. Patients’ perceptions of illness severity in advanced heart failure in Heart failure 2015. Seville (Spain): The Heart Failure Association of the European Society of Cardiology; 2015. 34. Hupcey JE, Kitko L. Health policy implications: outpatient palliative care for heart failure. In American Academy of Nursing 40th Annual Meeting and Conference. Washington DC, October, 2013. 35. Fitzsimons D, Mullan D, Wilson JS, et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med 2007;21(4):313–22. 36. Hupcey JE, Kitko L. Perceptions and utilization of palliative care services for HF patients at end of life. In Eastern Nursing Research Society, 27th Annual Scientific Session. Washington, DC, April 17, 2015. 37. Hermani S, Letizia M. Providing palliative care in end-stage heart failure. J Hosp Palliat Nurs 2008;10(2):100–5. 38. Hupcey JE, Kitko L. The troubled water under the bridge: lack of palliative care referrals for heart failure. In European Association for Palliative Care, 14th World Congress. Copenhagen (Denmark), May 8, 2015.
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39. Albert NM, Paul S, Murray M. Complexities of care for patients and families living with advanced cardiovascular diseases: overview. J Cardiovasc Nurs 2012;27(2): 103–13. 40. Haines KJ, Denehy L, Skinner EH, et al. Psychosocial outcomes in informal caregivers of the critically ill: a systematic review. Crit Care Med 2015;43(5):1112–20. 41. Goodlin SJ. Palliative care in congestive heart failure. J Am Coll Cardiol 2009; 54(5):386–96. 42. Dunlay MS, Strand JJ. How-to discuss goals of care with patients. Trends Cardiovasc Med 2015. [Epub ahead of print]. 43. IAHPC. IAHPC list of essential practice in palliative care. 2013. Available at: www. hospicecare.com. Accessed March 30, 2015. 44. Pastor DK, Moore G. Uncertainties of the heart palliative care and adult heart failure. Home Healthc Nurse 2013;31(1):29–36. 45. Sidebottom AC, Jorgenson A, Richards H, et al. Inpatient palliative care for patients with acute heart failure: outcomes from a randomized trial. J Palliat Med 2015;18(2):134–42. 46. Meghani SH, Hinds PS. Policy brief: the Institute of Medicine report Dying in America: improving quality and honoring individual preferences near the end of life. Nurs Outlook 2015;63(1):51–9.
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EdD, CRNP
a,
*, Lisa Kitko,
PhD, RN
b
, Windy Alonso,
MS, RN
a
KEYWORDS Palliative care End of life Heart failure Family caregivers KEY POINTS Heart failure is a progressive life-limiting disease, with high morbidity and mortality, yet advance care planning, end-of-life conversations, and referrals to palliative care do not occur frequently. Palliative care is a philosophy of care focusing on patients and their families from diagnosis through death and bereavement. Nurses serve as a bridge to palliative care by providing basic palliative care interventions and recognizing the time for referral to specialized services. The 4 overarching components of basic palliative care address issues concerning the patient’s emotional, social, spiritual, and physical issues, including uncontrolled symptoms. Nurses should be advocates for patients and caregivers by initiating specialized palliative care consults for all patients with advanced heart failure.
HEART FAILURE BACKGROUND
Approximately 5.7 million Americans are diagnosed with heart failure and this number is increasing.1 It is anticipated that the number of heart failure cases will increase 46% by 2030 to more than 8 million, with the cost surging from $30.9 billion in 2012 to almost $70 billion in 2030. The number of deaths attributed to heart failure also remains high; the numbers virtually unchanged from 15 years ago, with the 5-year mortality rate after initial diagnosis still hovering around 50%. Patients with advanced or stage D heart failure even have a more dismal prognosis.2 After a hospitalization for an acute exacerbation, there is an 11% chance of death within 30 days of discharge and a 25% chance of readmission within 1 month of discharge.3 Although heart failure is a progressive and life-limiting disease with high morbidity and mortality, advance care planning and end-of-life conversations frequently do not
There are no commercial or conflicts of interest for the authors. a The Pennsylvania State University College of Nursing, 1300 ASB/A110, 90 Hope Drive, Hershey, PA 17033, USA; b The Pennsylvania State University College of Nursing, Nursing Sciences Building, University Park, PA 16802, USA * Corresponding author. E-mail address: [email protected] Crit Care Nurs Clin N Am 27 (2015) 577–587 http://dx.doi.org/10.1016/j.cnc.2015.07.007 ccnursing.theclinics.com 0899-5885/15/$ – see front matter Ó 2015 Elsevier Inc. All rights reserved.
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occur, as patients, families, and health care providers wait for each other to initiate these discussions.4–7 One of the recommendations from the landmark (IOM) report, “Dying in America,”8 is clinician–patient communication with advance care planning (p. S-9), which at present is poor and feeds into the lack of services offered to patients with serious advanced illnesses and lack of advance directives, even with the sickest of patients.9 These services include both hospice and palliative care, and have been recommended to meet the complex needs of patients and their family caregiver throughout the heart failure trajectory.10 In addition, when palliative care and hospice are used in the last year of life, the rates of hospitalizations and outpatient visits decreases.11 The use of these services also is extremely important because heart failure patients are at risk for rapid decline and sudden death.12,13 However, in-patient palliative care consultations, if done, typically are not being ordered until the last month of life,14 although the use of these services decreases costs and increases patient satisfaction.15 Although the percentage of end-stage heart failure patients referred to hospice has significantly increased since 2000, heart disease in general still only accounted for 11.2% of hospice admissions in 2012,16 with less than 10% of these admissions for heart failure.13,17 For other medical and therapeutic services (eg, cardiac rehabilitation, occupational therapy, physical therapy) focused on promoting, restoring, and maintaining health, with the goal of maximizing the level of independence, only 4.3% of admissions were for heart failure.18 WHAT IS PALLIATIVE CARE?
Palliative care is a philosophy of care and care delivery service that focuses on both patients and their families throughout the trajectory of a life-limiting/serious illness,10 from diagnosis through death and bereavement. As a philosophy of care, palliative care is delivered across the continuum of health care settings by both certified palliative care specialists and noncertified health care providers.8 Specialty palliative care is provided by a team of palliative care–certified doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Basic palliative care is delivered by non–palliative care–certified professionals. These include services provided by primary care providers, subspecialists (eg, cardiologists), nurses, and others health care professionals who care for these patients. According to The National Consensus Project for Quality Palliative Care the goals of palliative care are: to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.19(p6) Specific aspects of palliative care include the prevention and relief of suffering by means of early identification, assessment, and treatment of pain and other problems, whether they be physical, psychosocial, and spiritual.20 Palliative care is differentiated from hospice in that the focus of palliative care is on patients with a serious illness and can be provided along with life-sustaining treatments. Hospice, which also delivers palliative care, is described as, “a service delivery system that emphasizes symptom management without life-prolonging treatment and is intended to enhance the quality
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of life for both patients with a limited life expectancy and their families.”21(p2) The traditional model of palliative care is shown in Fig. 119; however, this model shows an abrupt shift from life-prolonging therapy along with palliative care to hospice. Conceptually, this is not accurate because palliative care is an overarching philosophy that includes basic palliative care delivered by all health care providers along with specialty care and hospice as part of the delivery mode of care. Fig. 2 depicts a more encompassing model of palliative care as both a service model and philosophy of care. COMPLEXITIES OF HEART FAILURE AND PALLIATIVE CARE
Because heart failure is a life-limiting illness, patients diagnosed with heart failure fit the criteria for the provision of palliative care; however, few patients receive these services.22 There are many reasons why services are not received, including the unpredictable course of heart failure, which complicates prognostication; failure by health care providers to have advance care planning and end-of-life conversations with patients and families; a lack of understanding of palliative care by providers,4,23–25 patients, and families26,27; and a limited availability of specialized palliative care services.28,29 Heart Failure Illness Trajectory: Unpredictable Course
The heart failure illness trajectory is complex and unpredictable.2,12,30 The unpredictable nature of the illness trajectory is cited as a reason for services not being offered and, if offered, not being accepted by heart failure patients and families. The typical heart failure trajectory is characterized by acute crises followed by periods of stability that may last weeks to months to even years (Fig. 3).31 The concern with this model is the risk of rapid cardiac decompensation or sudden death. Although there are predictive models available, physicians may not attempt to risk stratify patients, are unfamiliar with these predictive mortality models, or are not comfortable with accuracy of models, and thus do not use them.17 To complicate risk stratification, predicted mortality can change with advances in medical management, cardiac resynchronization therapy, and device implantation (eg, implantable cardioverter–defibrillators and mechanical circulatory support devices). However, these patients still have heart failure and the use of and discontinuation of these devices need to be considered,13 because continued use of devices may not prolong life, but instead prolong dying.32 A more realistic and updated model of the heart failure illness trajectory is shown in Fig. 4. Failure to Have the Conversation
A second reason why palliative care is not offered is the lack of conversation about advance care planning, advance directives, and goals of care as the patient moves through the heart failure trajectory.5,7 Typical conversations between health care
Fig. 1. Typical model of palliative care. (Adapted from National Consensus Project. Clinical practice guidelines for quality palliative care. 2nd edition. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009.)
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Fig. 2. Model of palliative care as an encompassing philosophy of care. (Adapted from National Consensus Project. Clinical practice guidelines for quality palliative care. 2nd edition. Pittsburgh (PA): National Consensus Project for Quality Palliative Care; 2009.)
providers and patients focus on disease management and not end-of-life discussions. As a result, many patients do not even understand the terminality of heart failure.33 As stated, health care providers are not comfortable with initiating these conversations, but once initiated, many patients want to continue the discussion.6,7 Providers may need additional support and skills training to learn how to begin these conversations without worrying about taking away hope or fearing patients may perceive the conversations as being abandoned by the provider.25 Lack of Understanding of Palliative Care as an Overarching Philosophy Encompassing Hospice
Health care providers do not always have a clear understanding of palliative care and many cannot differentiate palliative care from hospice; thus, patients and their families are not offered these much-needed services.23,24 Additionally, providers do not always realize that providing palliative care or referring a patient and family to the specialized service is not prognosis dependent and is part of life-prolonging treatment.25 Without a clear understanding of palliative care, there is a fear of offering services too early owing to the belief that this service should be reserved for those near death.4 As discussed, palliative care encompasses care provided through the whole heart failure illness trajectory, from diagnosis to death and bereavement. The intensity of palliative care and the type and providers of palliative care (eg, basic vs specialized) may change throughout the trajectory, as depicted by the curved line in Fig. 5.
Fig. 3. Typical chronic disease trajectory. HF, heart failure. (Adapted from Committee on care at the end of life, Field MJ, Cassel CK, editors. Approaching death: improving care at the end of life. Washington, DC: National Academy Press; 1997.)
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Fig. 4. Heart failure (HF) disease trajectory.
Lack of Available Services/Teams
Although there is consensus that palliative care should be offered from the time of diagnosis for patients with a serious life-limiting illness, the availability of specialized teams limits these services, many times to patients approaching the end of life.34 Thus, a gap exists between what specialized palliative care teams are able to offer and the needs of all palliative care hospitalized patients.29 The use of basic palliative care, provided by non–palliative care–certified providers could meet this need; however, many health care providers feel ill-equipped to provide these services and the resources to assist them are not readily available.35 In many areas of the country, there are limited specialty services and a lack of education for the provision of basic palliative care.28 An additional reason why services are not used, is related to patients and/or their family caregivers refusing to accept services.36 Use of services, including hospice, is influenced by cultural and religious attitudes, as well as patient preferences.17 Patients and their family caregivers also may not understand the terminality of heart failure, with the belief that patient always got better before.2,24,26,33,37,38 BASIC PALLIATIVE CARE FOR HEART FAILURE
Nurses are the bridge to palliative care services for patients with heart failure. There are many aspects of nursing care that are in line with basic palliative care interventions. By understanding what staff nurses, advanced practice nurses, and other health care providers can provide on a daily basis, specialized services can be reserved for when the patients’ needs are too complex for basic palliative care.29 Patients and their families face numerous challenges when living with advanced heart failure, which include physiologic, psychological/emotional, functional, social, and financial concerns.39 Families encounter additional challenges because their needs are not
Fig. 5. Model of palliative care for heart failure (HF).
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always assessed and their issues are not addressed, but are at risk for poor health outcomes and depression, especially when the patient is critically ill.40 Basic palliative care can help to address some of these concerns and challenges with the patient’s and family’s goals for care.25 Goodlin41 provides a comprehensive description of care for patients with heart failure that varies based on the New York Heart Association’s functional status classification and illness severity. Descriptions are given for general heart failure care (diagnosis, medications, and plans/goals of care) and supportive care, which includes communication, education, psychosocial or spiritual issues, and symptom management. The supportive care is part of basic palliative care that can be offered by all nurses and other non–palliative care–certified health care providers. The principles of palliative care for heart failure include managing burdensome symptoms that decrease functioning and quality of life and supportive care to address other issues.10 Included throughout the provision of palliative care is the continual conversation about goals of care, throughout the course of the disease and, in particular, as the patient’s condition changes and as advanced medical management and devices are discussed and implanted. There are 4 overarching components of palliative care for patients with heart failure: the patient’s physical issues and uncontrolled symptoms, emotional issues, social issues, and spiritual issues.8 These areas can be addressed through a comprehensive assessment and evaluation, followed by planned interventions to meet the identified needs of the patient. To begin to assess these issues, nurses need to have an open line of communication with the patient and his or her family members. Within this open communication, discussions related to goals of care based on potential treatment options, end-of-life wishes (including advance directives, advance care planning, and device deactivation) can be included in the conversation8,13 (For a full description discussing goals of care for patients with cardiovascular disease, see Dunlay and Strand 201542). During these encounters, nurses can both communicate with, counsel, and educate the patient and family about heart failure, proposed treatment options, and available supportive services, including financial services. Patients and their family caregivers may not seem to be distressed emotionally, but really do need time to talk about the challenges they face living with heart failure. The nurse should evaluate the patient and family caregivers’ ability to handle the challenges associated with heart failure, assess whether their goals for care match the plan of care, and determine whether the goals for care realistic based on severity of the heart failure. Nursing interventions include spending time talking to the patient and family caregiver, giving advice, explaining the types of available supportive services, explaining where they can get support, and referring to a social worker or chaplain, if needed. Patients and their caregivers also may not fully understand heart failure and its trajectory and they may need further explanation of the numerous options for heart failure management that they have been presented. The nurse should assess the patient and caregivers’ knowledge base, asking them what they understand about the heart failure and the treatment options presented to them. Education is extremely important here. This should include education about heart failure, where to access additional information about heart failure and its treatment options, what to expect as the disease progresses, and answer questions about management options. Table 1 shows components of basic palliative care and nurses’ role in providing palliative care. These components were adapted from the Institute of Medicine’s “Dying in America, Improving Quality and Honoring Individual Preferences Near the End of Life”; the American Heart Association/American Stroke Association’s
Table 1 Components of palliative care for heart failure Rationale
Nursing Care
Nursing Intervention
Physical: Symptom management
Uncontrolled symptoms result in a decreased quality of life and additional burden on the patient and the family caregiver.
Assess for uncontrolled symptoms, such as pain, shortness of breath.
Treat via standing orders, discuss with heart failure team if symptoms persist. Consider referral to specialized palliative care, if uncontrollable.
Emotional issues
Depression is common in heart failure,10 as is emotional distress.
Assess for depression and emotional distress.
Discuss suspected depression with the health care team and family caregiver. Spend time with the patient, allowing time to verbalize feelings/concerns.
Social/family issues
Having a chronic, life-limiting illness can place a strain on families. Patients may not be able to perform activities of daily living without assistance and at some point, may need continuous assistance.
Assess the family/social situation to determine what issues are present and the ability of the family to care for the patient at home.
Education about caring for the patient at home may ease some of the tension (eg, how to use a weekly organizer for medications); at other times, a referral may be needed for financial or social services.
Spiritual issues
Serious life-limiting illnesses can have a spiritual/religious component, even for individuals who do not consider themselves “religious.”
Discuss their beliefs with the patient and family caregiver.
Refer the patient and/or caregiver to the chaplain, if needed.
End-of-life care
As patients transition to end of life, many of these issues need to be addressed; cultural and ethical aspects of end-oflife care need to be assessed.
Patients and families should be supported through the end-of-life transition and families require additional support through bereavement.
Nurses can support the patient and family through end of life; referral to the specialized palliative team and to hospice is warranted.
Family caregiver assessment
Family caregivers are integral partners in the care of the patient and their well-being is important.
Assessment of family well-being as part of the nursing assessment.
Support the family and provide guidance on managing the patient and taking care of themselves.
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Component
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“Principles for Palliative Care”10; Goodlin’s “Palliative Care in Congestive Heart Failure”41; the International Association for Hospice and Palliative Care (OAHPC), “IAHPC List of Essential Practice in Palliative Care”43; and Pastor and Moore’s “Uncertainties of the Heart, Palliative Care and Adult Heart Failure.”44 In addition to the 4 components of palliative care (physical, emotional, social, and spiritual), end-of-life care and family caregiver assessment are discussed. Furthermore, the National Consensus Project for the Advancement of Palliative Care19 lists other domains that need to be considered. These include the cultural aspects of care and end-of-life decisions and the ethical and legal aspects of care. According to the IOM report, “frequent assessment of the patient’s physical, emotional, social, and spiritual well-being”8(pS-7) must be undertaken. This is imperative because a patient’s condition changes continually (either declining or improving) and new medical interventions are proposed. These assessments, which are part of routine nursing care, need to be updated and ongoing to reflect accurately the changing needs of the patient and family caregiver. Staff nurses and advanced practice nurses are able to manage many of the patient and caregiver’s needs. However, if there are issues that are unmanageable, they should be discussed with the health care team, and ultimately referred to the specialized palliative care team, when necessary. FUTURE DIRECTION OF PALLIATIVE CARE IN HEART FAILURE
Palliative care plays an important role in addressing the complex needs of patients and families living with heart failure, a serious life-limiting illness. All nurses should be advocates for patients with heart failure and their family caregivers and be prepared to initiate specialized palliative care consults for all patients with advanced heart failure. However, the role of nursing does not end with this consultation. Basic palliative care provided by nurses must continue and nurses must be active members of the interdisciplinary team caring for the patient and family caregiver. As seen in Fig. 2, palliative care is an overarching philosophy that begins with the diagnosis of a serious, life-limiting illness and continues through hospice and bereavement. Caring for heart failure patients and their families is even more complex than depicted in Fig. 5, and requires nurses, as part of the interdisciplinary health care team, to be continually assessing the ever-changing needs of these patients and families. Areas for future improvement can be addressed through research and in clinical practice, and with education. It is known that in-patient specialized palliative care consultations have been found to improve outcomes such as symptom burden, depression, and quality of life as compared with routine care.45 What has not been studied is whether these improved outcomes would be similar with basic palliative care provided by staff nurses, advanced practice nurses, and non–palliative care– certified cardiologists. The problem is that many nonspecialized health care providers, including nurses, do not feel comfortable providing basic palliative care and are even less comfortable starting the conversation about advance care planning, goal setting, and other end-of-life topics. Education on these areas needs to be strengthened in the curriculum for nursing students and medical students. It also must be included in hospital orientation for all health care providers and part of mandatory continuing education for all providers. We know that nurses have an important role in supporting, counseling, and educating patients and their family caregivers as they transition through the heart failure trajectory. Nurses are optimally positioned to promote the recommendations of the IOM report advocating for the inclusion of palliative care early in the illness trajectory—with timely referrals to specialized services and hospice.46 Through the
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use of basic and specialized palliative care, nurses can address the holistic needs of both patients and families living with a serious life-limiting illness such as heart failure while improving outcomes and quality of life through the heart failure illness trajectory. REFERENCES
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